From this paper, it would seem that the Japanese were first to propose the term "Lewy body disease" and "diffuse Lewy body disease" (proposed in 1984). They also "classified Lewy body disease into three types: brainstem type, traditional type and diffuse type." "The diffuse type is now considered DLBD, while the brain stem type is considered PD." In the US, there's a fourth type -- incidental Lewy body disease -- and the word "transitional" or "limbic (transitional)" is used rather than "traditional."

The authors refers to a pure form and a common form. I've never heard the term "common form" before. "Pure DLB" refers to the minority of cases where DLB occurs *without* AD. So, the "common form" is DLB with AD.

The first author states: "I pointed out that the clinical features differed between the two forms. In the common form, all cases showed presenile or senile onset, and the chief clinical feature was progressive dementia, followed by parkinsonism in 70% of cases, while in the pure form most cases showed early onset and the chief clinical symptom was parkinsonism, followed by dementia." This description of "pure form" cases is what was seen in Japan. The author also examined cases in Europe and America, concluding "in the pure form, Japanese cases were usually of young onset with parkinsonism as the chief symptom and Euro-American cases were of older onset with progressive dementia as the chief symptom, similar to the common form."

I mentioned to a neurologist recently that we have cases in our local LBD support group where there's no parkinsonism. The neurologist replied: "Yet. These symptoms will occur later on."

I've copied the abstract below. The article provides the story of scientific discovery, and the slow pace of the international community to adopt new terminology.

Robin

Neuropathology. 2010 May 24. [Epub ahead of print]

Memorial Symposium: Milestones in Neuropathology from Japan
The first autopsied case of diffuse Lewy body disease (DLBD): re-examination by recent immunostaining methods
The 50th Anniversary of Japanese Society of Neuropathology

Abstract
Materials from our first autopsied case of diffuse Lewy body disease (DLBD), that was originally reported in 1976, were re-examined using recent immunohistochemical methods. Lewy pathology consisting of Lewy bodies and Lewy neurites appeared much more marked with alpha-synuclein immunostaining than had been detected with classical stainings.

This case and our other similar cases prompted us to propose the terms "Lewy body disease" in 1980 and "diffuse Lewy body disease" in 1984. We also reported in 1990 that DLBD was classified into two forms: a pure form and a common form. Based on these studies the term "dementia with Lewy bodies (DLB)" was proposed in 1996.

Since 1980, we have insisted that DLB, Parkinson disease (PD), and PD with dementia (PDD) should be understood within the spectrum of Lewy body disease. This insistence has been recently accepted by the International Workshop and the International Working Group on DLB and PDD in 2005 and in 2006, respectively.

PubMed ID#: 20500449 (see pubmed.gov for this abstract only)

Thu May 27, 2010 1:41 pm

mariesmac

Joined: Mon Mar 08, 2010 9:32 pmPosts: 120Location: Dumfries Va

Very interrestng.My wife's diagnosis was DLBD by 1 Neurologiest and just LBD bythe other two. I really find it hard to believe that the Medical community hasn't come up with something in 26 years to treat this condition. Or have they and just holding it back? I am a very bitter person who is probably going to lose their LO of 46 years soon. It just gets worse. Halucinations last almost all day most days. at night she is having dreams and calling out for people. last night she was thanking people for visiting her. Her backward leaning is taking it's toll on me. Why God, Why

Sun May 30, 2010 8:13 pm

dorthea

Joined: Sat Oct 06, 2007 4:28 pmPosts: 781Location: LA

Why Me, why me??!!??

Dear, dear MMac. Pardon me if I am repeating myself. I'm sorry, also, to be in this position but we are here and the most we can do is try to leave the LBD situation better than we found it. As I have said before we are the first generation to be recognized at all. True others have peeped at what is happening but we are the first ones who have a frame work of the loved ones who are suffering and we have more to work with to prove to the medical world that this actually does exist and we are presenting to our local doctors "test cases" for them to study and make informed decisions... we can have our local doctors send the medical records for clinical diagnosis and later send the brain tissue for a definate diagnosis. I know, I know, there is no harder decision for you to make but if we do, in fact, want to find what in the world this is creating the havoc in our lives, it is the only way. Not for us it is true but maybe for our grandchildren. So we are given the challenge of becoming partners with the medical team to keep the individual symptoms as much under control by studying what others have learned and after we find physicians who have an open mind to our offered help, we can report and offer suggestions. We are indeed fortunate to have been chosen for this task at a time when this forum is up and running. Before we would have floundered and watched our loved ones be administered drugs which would have forced them to live out thsir days in an institution in a strait jacket.

Why me? Because we are finally enlightened enough to be part of the care giving team. Care giving now and, hopefully, donating the brain tissue for diagnosis and study.

We all love you, Mariesmac, for your care of your lifelong partner. For your understandable anger at "the system", for your [seeming] helplessness, and for your wilingness to ask questions. Getting all this out of your system is the only way you can continue to help. We love you and God loves you. Hang in there.

Dorthea

_________________"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.

Sun May 30, 2010 10:42 pm

mariesmac

Joined: Mon Mar 08, 2010 9:32 pmPosts: 120Location: Dumfries Va

Why Me

Dorthea, Thank you. Your post has had me feel a little better. I don't know what I would do without this site. I am just so frustrated at the system when I read from places like Australia, Asia and Europe that they have a system to help care for the elderly. I am not young myself in age but thank God I have my health to take care of my LO. Of course that has gone down hill with my emotions. My LO and I cried together yesterday for an hour. Then I by myself later out of her site. I just feel so useless at times and when I have to yell for her attention I hurt so bad inside.

Thanks again, you have helped me.

Don

(I am Marie's Mac- a nickname she gave me)

Mon May 31, 2010 7:48 am

irene selak

Joined: Sat Jan 03, 2009 2:59 pmPosts: 1978

Don,
I understand how difficult this is to deal with and I second all that Dorothea says. You are dealing with so many emotions and a good cry cleans the soul. Just the fact that this is your life's partner and then dealing with a disease that is so dibiltating on top of the already high emotions is tough for anyone, I too pray everyday for something for LBD for the people that suffer it, I know it is too late for my husband but I do think of all the people who follow in our shoes. Hang in there, none of us really has the answers but we are here to listen anytime!

_________________Irene Selak

Mon May 31, 2010 10:44 am

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Don - sending you all the best wishes, thoughts and a big cyber hug this morning. It is a terrible disease to deal with and it is so true that being able to vent somehow makes us feel a little better. There are lots of people here who are walking in your shoes, or who have completed the journey with a LO and having their help, advice, support is immeasurable. Hang in there, and get out for a break as often as you can because you do need to take care of you, too. Lynn

Mon May 31, 2010 11:20 am

mariesmac

Joined: Mon Mar 08, 2010 9:32 pmPosts: 120Location: Dumfries Va

Thanks All. A new Physical Therapist was here today and this one listened to me. She saw how the balance problem is taking away all my wife's ability to function. So, maybe it won;t help, but it helps to have someone recognize the problem.

I really am glad that this site exists. I don;t know what I would do otherwise. The people in Lynchburg have invited me down but it's about 3 hours away from me. I appreciate all the advise and help everyone on here gives to me.

"My wife's diagnosis was DLBD by 1 Neurologiest and just LBD bythe other two."

DLBD = LBD

"I really find it hard to believe that the Medical community hasn't come up with something in 26 years to treat this condition."

Actually, there are some very good meds for LBD. The AChEIs usually work better in LBD than in AD. (AD was discovered over 100 years ago, and the treatments there are paltry.) The quality of life can be quite good in LBD with an appropriate medication regimen.

"I am a very bitter person who is probably going to lose their LO of 46 years soon. It just gets worse."

I hope you are seeking some counseling. Caregiving can be extraordinarily stressful.

Robin

Wed Jun 02, 2010 1:11 am

mariesmac

Joined: Mon Mar 08, 2010 9:32 pmPosts: 120Location: Dumfries Va

Robin. I finally was referred to a Nurse in a hospital in Florida who runs the Memory disorder Clinic. I talked to her for over an hour yesterday and was very enlightened in what she told me. There are ways to handle the hallucinations that I was not doing well. I now know. This site and some of my contacts have helped me a lot. I am and always will be bitter that the medical community has not come up with a cure. It seems when someone higher up the food chair became a victim of Polio, all of a sudden there was a cure.

Thanks everyone for listening

Wed Jun 02, 2010 7:07 am

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Mac, I understand your frustration about LBD but blaming the medical community is a bit of an overreach. In the case of polio, the 'cure' was instead a preventative vaccine based on the causative agent, the virus. Since we don't yet know the cause of LBD, I believe there should be more research emphasis on that. We might find that some environmental contaminant is responsible. It may not help our LOs but it might save later generations from this grief.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Wed Jun 02, 2010 9:38 am

mariesmac

Joined: Mon Mar 08, 2010 9:32 pmPosts: 120Location: Dumfries Va

Mockturtle, well I have to blame someone to get my frustrations out. What happened to the study when MJFOx went to the mountains in India and all his Parkinson symptoms disappeared? That would be a start. I know NIH has one study going on in India but why don't we ever hear about these?

Don (68) married to Marie (68) PD since 20o6 after misdiagnosed from 2004.
LBD actually identified in Jul 08 but never told until Mar 10.

Wed Jun 02, 2010 9:48 am

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

My observation is that Michael J. Fox still has obvious Parkinson's symptoms when you see him on TV, and I think he's on massive doses of drugs to control his symptoms, from what he's said in interviews.
When famous people contract various diseases or dev. certain conditions we do hear more about it, for sure, and some of those folks pour a lot of their own money into research. There are just so many medical problems that people have, and not enough money for each to do the research that is needed. I think it's a matter of who can get the funds, and for how long. I am grateful when people donate money to the causes they think are the most worthy.
LBD is frustrating, hopeless for many, and learning how we can cope is about the best we can do for right now, along with being the support person and advocate for our LOs. You have lots of support here from people walking in the same shoes you are, and getting a private counselor has been a big help to me as well. Lynn

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